Re: New Test Results - Time for Treatment?

[Guest guest]

Treatment not yet indicated. Why chose BR? FCR is still the

preferred first line. BR has never been compared with FCR or

FR and it is certainly no less toxic.

Terry Hamblin MD

[Guest guest]

BR vs FCR is currently being compared in the CLL10 trial of

the German CLL-Study Group with Dr. M. Hallek as the

principal investigator...

http://www.dcllsg.de/en/trial/cll10/CLL10_Syn_en_Amd1_v3.0_100625.pdf

Very preliminary results this year, if we are lucky...

~chris

.. BR has never been compared with FCR or

> FR and it is certainly no less toxic.

>

> Terry Hamblin MD

[Guest guest]

Hi Charlie -

1)Get a 2nd opinion from a CLL expert doctor before starting

any treatment. Many of us coordinate our CLL care between a

local doctor & a CLL expert doctor. If you do not currently

have a CLL expert doctor find one. The following link will

direct you to a list of all the CLL expert doctors -

http://cll.acor.org/DRtable.html

2) Read all the recent 6/3 & 6/4 postings by Al Janski on

the topic " PCI-32765 pushes the cells out of the lymph

nodes. " This contains helpful info about the dangers of

over-aggressive treatment of untreated low risk (i.e. IgVH

mutated patients). You did not mention your IgVH mutation

status in your post.

3) It's critically important to become an informed CLL

patient. The best way to do this is by regularly reading the

postings on this website plus the overall info you

will find on these 3 websites -

http://cllcanada.ca/2010/index.htm

http://www.clltopics.org/PI/PrognosisatDiagnosis.htm

http://updates.clltopics.org/

Patti Kruse

[Guest guest]

I wouldn't treat - leave well enough alone -

Re: Charlie's message:

/message/15253

[Guest guest]

Charlie,

My situation is similar to yours. Diagnosed in 2007, WBC

ramped up to 35+ then some swelling, fatigue and discomfort.

All indications that treatment is desirable if not

necessarily immediate. My oncologist's opinion is that FCR,

which was the " gold standard " since 2005, is now joined by

other cocktails that appear to be as good but less toxic. At

his suggestion I tried to get into a trial for

rituximab+ABT263, was accepted, but randomized into the

" rituximab only " control arm, so I declined further trial

participation.

Now I plan on starting w. rituximab plus bendamustine which,

he believes will be less toxic than FCR. Also went to a

briefing at UCLA and concluded that there is never enough

data to conclude for any given patient which treatment will

be most effective or less toxic. Hence, it makes some sense

to start with the less toxic.

Based on your writing, your oncologist is being

appropriately cautious and up-to-speed on latest, best

treatments.

I'll get my first dose on the 16th; will post how I feel

around the 18th.

[Guest guest]

Charlie,

You don't mention the status of your spleen. I assume it is

not terrifically enlarged if your platelets are normal, yes?

Certainly waiting for the results of BMB makes a lot of

sense and it sounds like you are presently symptom free

(except for tightness in your neck), so in your position, I

would be inclined to put off treatment a bit longer until it

is really necessary due to quality of life issues or affect

on an important organ. Your choice of modalities should be

influenced by your goals for treatment, which are? Good

luck, let us know what you decide and why.

Toby Hollander

Portland, ME

[Guest guest]

My feeling on when treatment is necessary is when you see a

change in the pattern of lymphocyte increase based upon your

spreadsheet of WBC and absolute lymphocyte counts (you do

maintain a spreadsheet of those numbers, right?)

In my case, the absolute lymphocyte count and the WBC were

bouncing around at a pretty steady state when the numbers

took off in a vertical pattern, shooting straight up. I

repeated the test a couple of months later, and that pattern

continued. I knew then that it was time to treat.

Also, please don't pick FCR or BR as your first treatments!

These are drugs that when you fail them (and you will), you

have few options left. Keep those in reserve until you

really need them. And FCR raises the risk of MDS and

Richter's, which have no cure and have life spans in the

months. You don't want that.

AND... see a CLL expert doc. You don't need to make them

your first choice, but they see hundreds of CLL cases a

year, whereas your local onc doc may see one or two. There

are many horror stories about ill-informed oncologists

killing their patients with idiotic advice.

[Guest guest]

Charlie,

My husband is your age and finished BR in February. He is

doing great now.

He never knew he had CLL until last summer. He had retired in

April because he felt he was too old to continue his job. By

July the lymph nodes in his neck were huge. He had pain in

his pelvic area, night sweats and fatigue. At diagnosis his

WBC was 49, his lymph nodes all over were 6cm and he was at

the point of Richter's Transformation.

He had to start treatment. He had 6 treatments of BR. After

the first treatment the lymph nodes in his neck were down to

normal. Half way through he had another CT scan and his

nodes were normal everywhere except the nodes deep in he

pelvic area. At the end of treatment his nodes are normal

and his WBC is good.

He had very few problems with treatment. Didn't loose his

hair. Had nausea after the first treatment but once the

nausea medication was changed he didn't have a problem.

Best of luck with the treatment you choose.

[Guest guest]

I wouldn't put BR in the same category as FCR. When you fail

BR you can repeat it. The key is to stop treatment before

the full six rounds if possible. The marrow damage and

T-cell kill is less with bendamustine.

Ron

wrote:

/message/15272

[Guest guest]

Well said Rick!

There seems to be an unjustified enthusiasm for bendamustine

at present. Following the JCO paper from OHU I would much

rather go with FR if there is justification for a less

intense regimen than FCR.

Terry Hamblin

PS are you going to EHA?

[Guest guest]

Group

thanks to all for your helpful tips. They're invaluable.

Re: question on my trend line, here's the last 12 months:

Range Current 6 months Ago 9 months ago 12 Months ago

WBC 3.8-10.8 41.7 35.4 35 28.5

LYMPH ABS .65-4.25 33.9 25.13 22.8

Also, none of my lymph nodes are what I would call excessive

(1.9 CM is the largest) and my spleen isn't enlarged either.

I had CATS, bone scans, and PETS this last go around and

nothing unusual was noted (other than the normal wear and

tear on a 62 year old body)

Re: locating a specialist - I'm located in Dallas. I

looked at the CLL specialist list and saw several MD

docs (Houston) but none in Dallas area which

somewhat surprised me because of Univ TexasSouthwestern

medical school located here which has a large oncology

staff. I'm not opposed to going to Houston but I wouldn't

mind finding someone closer either.

Thanks

Charlie

[Guest guest]

We really do not know if this is true. We do not have any

long term data regarding the late effects of bendamustine

compared with fludarabine. Both are very immunosuppression

(need shingles and PCP prophylaxis with both) and both

damage marrow stem cells.

The one thing we do know is that bendamustine (as a single

agent) has a median progression free survival of 23 months,

while FCR has a progressin free survival of 50 months.

While both are toxic, the benefit of FCR is longer.

With this being said, if I need to give chemotherapy to a

patient and do not have a clinical trial available, I

generally use FR. My hope is that even though FR is less

effective than FCR, it is much better tolerated and has less

long-lasting toxicities. I then hope that the next time

someone needs treatment, I will have a CAL-101, PCI-32765 or

other agent available for them to use.

Rick Furman

Ron wrote:

> I wouldn't put BR in the same category as FCR. When you fail

> BR you can repeat it. The key is to stop treatment before

> the full six rounds if possible. The marrow damage and

> T-cell kill is less with bendamustine.

[Guest guest]

Hi Charlie -

Use the following link - for the ACOR list of all CLL

doctors in the USA and worldwide.

http://cll.acor.org/DRdoctors.html

I believe MD is the closest major medical center to

Dallas that has a group of CLL expert docs. Some excellent

CLL docs are at MD so it is probably worth a trip.

Many of us with CLL have a CLL team comprised of our CLL

expert doc who then works with our local oncologist to

manage our care.

Check out these sites for info on CLL and how to manage your

CLL. They are full of critical info you need to become an

informed CLL patient.

http://www.clltopics.org/PI/PrognosisatDiagnosis.htm

http://updates.clltopics.org/

http://cllcanada.ca/2010/index.htm

Good luck - Patti K

[Guest guest]

Charlie - THE CLL person at MD is Dr. Keating, one

of the top CLL specialists in the country. His office may be

able to recommend someone closer, but I think it would be

worth your time, especially if your insurance covers the

visit, to at least have a consult with him. As Patti said,

many people work with a local doctor with him overseeing

things.

Pat

Patti wrote:

/message/15304

[Guest guest]

As a patient it is very confusing to me to have such

differing opinions about bendamustine from the experts in

the field. Last year I consulted with Dr. Lawrence Piro at

the Angeles Clinic, who has treated several thousand people

with CLL. He said he no longer uses fludarabine because of

the toxicity to T-cells and bone marrow, and recommended

that I use bendamustine and rituxan. He told me that I will

have a much better chance of living a long life using

bendamustine instead of fludarabine. He also said there is a

lot of experience with this drug in Europe.

Ron

In a message dated 6/9/2011 7:08:27 AM Pacific Daylight

Time, writes:

Well said Rick!

There seems to be an unjustified enthusiasm for

bendamustine at present. Following the JCO paper from OHU I

would much rather go with FR if there is justification for

a less intense regimen than FCR.

Terry Hamblin

[Guest guest]

Ron:

I did a little research on Dr. Piro and could find nothing

as to his expertise with CLL. If he told you he has treated

thousands of CLL patients, I would be looking for another

Doctor as he is not being honest with you.

I was diagnosed in 2003. I had treatment in 05 with RF. I am

17p deleted, but have had no problems with the CLL. I have

had at least three Doctors tell me I needed treatment. I am

on my fifth or sixth Oncologist now. Thanks to the Doctors

that post here, Dr. Hamblin and Dr. Furman, I have not had

additional treatment. Did I know more than the Doctors that

said I needed treatment? Absolutely not. But I had the

expertise of Dr. Hamblin and Dr. Furman and all the

resources that the internet provides.

If it came to a choice between what any local guy said and

what our Doctors on this board say, it would always be my

choice to listen to Dr. Hamblin or Dr. Furman. Actually

reading the Google clips on Piro, it appears he would rather

be an actor. I certainly would not place my life in this

guy's hands. Get a real CLL expert such as Dr. Kipps in

San Diego.

Dave

[Guest guest]

I can't comment on Dr. Piro's expertise in CLL...

However, Dr. Hamblin recently stated

" It is important for doctors to stay within their

competence. Not every oncologist is a specialist in CLL.

Most oncologists think they are. "

Source: http://mutated-unmuated.blogspot.com/2011/06/salutary-tale.html

[Guest guest]

Why trash someone you know so little about?

In a couple of minutes on google I was able to find out that

Dr. Piro has published 51 studies in peer-reviewed journals

dating back to 1982, with the first article on CLL published

in 1988. I know that he is considered in expert in both

leukemia and lymphoma, and it is because of his expertise

with both that he was able to suggest a link between my

chronic hepatitis C infection and the development of CLL 30

years later. I had to consult with one of the top research

hepatologists in the US to find someone with the experience

to understand this relationship and advise me about a

treatment paradigm that would address both issues.

I was referred to Dr. Piro by the President of the St.

ph's Health Center in Santa (a close friend of my

Uncle). Although I am not qualified to rate or judge Dr.

Piro, it seems to me that he must be highly respected to be

the President of a clinic associated with a prestigious

hospital. Yes he does see a lot of people with money, but

given that people with money can choose anyone and they

choose him, I would think that would be a positive.

Since Dr. Piro has been treating CLL patients in Los Angeles

for over 20 years, it is not unlikely that he has treated

thousands of patients.

Ron

>

> Ron:

>

> I did a little research on Dr. Piro and could find nothing

> as to his expertise with CLL. If he told you he has treated

> thousands of CLL patients, I would be looking for another

> Doctor as he is not being honest with you.

>

> I was diagnosed in 2003. I had treatment in 05 with RF. I am

> 17p deleted, but have had no problems with the CLL. I have

> had at least three Doctors tell me I needed treatment. I am

> on my fifth or sixth Oncologist now. Thanks to the Doctors

> that post here, Dr. Hamblin and Dr. Furman, I have not had

> additional treatment. Did I know more than the Doctors that

> said I needed treatment? Absolutely not. But I had the

> expertise of Dr. Hamblin and Dr. Furman and all the

> resources that the internet provides.

>

> If it came to a choice between what any local guy said and

> what our Doctors on this board say, it would always be my

> choice to listen to Dr. Hamblin or Dr. Furman. Actually

> reading the Google clips on Piro, it appears he would rather

> be an actor. I certainly would not place my life in this

> guy's hands. Get a real CLL expert such as Dr. Kipps in

> San Diego.

>

> Dave

>